I have been thinking a lot lately or should I say more like wondering. I wonder a lot about many different things but for some reason the past weeks have laid the burden of all the drugs I am taking. Ever since I had the encounter with my new doctor who caught me off guard about getting off the Xanax. I think I have really gotten angry over the whole thing. I am cutting back and I know in the end it will all be worth it. It is like cutting down on a steroid dose it can be brutal to say the least. I talked with my Rheumatologist about cutting back on the steroids but there is no way I would be able to cut back on Xanax and the Medro. It could be a disaster so for now I work on one thing at a time. Right now I work on the Xanax breakup. I am sure this is what is affecting me so brutally right now.
It is like a nightmare you never wake up from, these drugs. I am kicking myself in the butt for ever starting them but then when I think back I felt I had no choice at the time. If didn't try something I wonder what would have happened. It is a hard burden to carry wondering if you did the right thing or not. At that time my eyes were so bad that NOT taking something wasn't even an option. Living life with my eyes closed was not living life for me at all. I mean it isn't like all the sudden I would have gotten better so now I live day to day wondering what tomorrow will bring. I usually do not do that but this week I have something on the calendar everyday and that can be extremely scary for someone with chronic illness. I try not to think to deep but at times like this past week with all the bad days I am a little weary wondering. I'm trying not to but when I had a great day yesterday I was very optimistic, until I woke up this morning. I literally did nothing today. Well, a few things, but mostly nothing. I hate it. I live in fear of all the things that can happen with this monster.
What if I never started the meds? What if I tried to go with all the natural remedies I read about? I do try the best I can to live a clean life but I am still human. It is hard to be perfect at everything when your life is so out of control and out of your hands so to speak. I mean, I watch everyone else live lives of doing while I sit on the sidelines just trying to be a little normal as I continue to lose more and more of some of the things I love. Getting out, going to church, hanging with friends at night, it is just too hard to do for me, unless I have good days. When you are in the bad you can hardly remember the good and vice versa when you are in the good days.
I sleep in late and have a very hard time getting out of bed. I get tired very easily just talking to people, I know that makes no sense, I am wore down by 7pm and need to just stop. It is impossible to explain, plus the world doesn't get it anyways, and I don't think ever will. The thoughts of kicking myself in the butt for going on drugs has been laying heavy on my heart as I wonder how many of my symptoms are really side effects of the drugs. It isn't like I can just stop all this madness cold turkey, it could be deadly if I do. No one understand this part of illness. I get lots of advice on what I should try from many people. Rich even gets it at work, "Has your wife tried this or that?" It drives me bonkers. It is a struggle and I sure do not need people butting into my treatment plan when they have no idea what is going on with me. People who have never been at one doctor appointment with us. People who have not witnessed how ill I really am. Enough said.
I cherish yesterday. It now sits in my file, my memory files, a perfect day with my family and grand babies, minus Richie and Leah sadly. I mourn for days like yesterday when I feel like I have over the past week, if yesterday is taken out of the equation. I begin to feel sorry for myself and I cannot tell you how much I hate that in a person. Although I cannot say I really feel sorry for myself, I guess what I am trying to say is that I am sorry for all I miss in life. All the missed opportunities I use to be able to participate in. I know this isn't explained well but I am sure my chronically ill friends know exactly the point I am trying to get across. I wonder if we ever truly accept this?
This weekend I did make it over to Hobby lobby. I didn't feel great Saturday, but I still made myself go. I decided I need a new hobby for the days I am just sitting feeling like crap. I bought a bunch of beads and string and decided I am going to start making necklaces and bracelets. It at least helps me to feel like I am doing something when I am weak and weary. Let me tell you, who would ever think someone with Inflammatory Arthritis could bead? Do you know how small that string and those beads are? Do you know how hard it is for someone with arthritis to hold onto anything small? It is sheer torture, believe me. BUT, I AM DOING IT! I will win! I also figure it is also good therapy for my hands so I am killing two birds with one stone. Yes, I will have necklaces and bracelets coming out of my ears but oh well. I will have something else to give away to others and leave a piece of me with them as they leave. Who wouldn't love that? There always is a brighter horizon even when you think there isn't!
I gotta go my beads are calling me. What is calling you?
God Bless!
Dianne
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